As I said in my last post it feels as if there is another elephant in the room. At the moment we no longer worry about dementia or memory problems. Now our worries are centred around whether or not he is about to start another nose bleed. He is not an easy patient. By no means a patient patient. He is frustrated at being kept quiet. Only reading or watching TV. I remind him that if they had a spare bed available they would have kept him on the ENT ward for 7 days complete bed rest. At least here at home he can sit in the lounge to watch TV or amble to the toilet.
This last mad dash over to A&E was a bit stressful. I wasn't my usual level headed and organised wife/carer. I forgot minor little things when I visited. I forgot to take slippers. I failed to leave him with money. I forgot to leave him a pen and notepad. I did remember a comb and to re- charge his shaver. I did put credit on his patientline and show him how to use the system before I left for home. So I wasn't a complete careless carer.
He wants now to be prepared for another urgent dash to the hospital. So we are talking about this "elephant in the room". He has made a list of what he would want if he's kept in overnight. And items he would like if he is in more than one night. We are going to pack a bag and leave it in readiness in the wardrobe. If I'm not at home when he is spirited away by the paramedics then like a boy scout he will be prepared. I can just pick up the bag and follow along once we know if he is to be kept as an inpatient again.
Showing posts with label caring. Show all posts
Showing posts with label caring. Show all posts
Saturday, 10 January 2009
Wednesday, 20 August 2008
Emotional breakdown . . .
I've had an emotional breakdown. A few days ago we started to discuss all our options on moving house. MyMan's chiropractor has again told him to walk only on level ground. Not to climb hills.
I am still keen to return to Surrey/Sussex area to be closer to family. MyMan cannot imagine being back in the over crowded south east. Where there are stabbings, droughts and traffic jams on an hourly basis. He knows. He reads the newspapers. He watches the TV and sees Sky News 24. He tells me that I wont feel safe there. It doesn't matter that I tell him I have felt no fear when I go on a visit.
He asked why I am so keen on living there. When I said I would like to see family once a week for a few hours at a time rather than once a year for a week he told me it was an emotional reaction. Yes it is. I then became even more emotional and spent 6 days crying at the drop of a hat.
When I wasn't crying we tried to talk about my emotional feelings in a rational way. I explained just how wearying it is having to schedule in arrangements so that I can visit family. How much of a strain it feels choosing the 'right time' to leave him for a week. How tired I am to begin with. How tiring the journey can be. How tiring it is to get around to visit with each member of the family so that none feel slighted or left out. How so many deaths of the older members still haunt me as I'd not had chance to see them when they were ill. How I'd missed out on attending their funerals.
How after a few days of being away, with time to laugh giggle and relax with my sister and friends that after a few days I have then to start thinking of the journey home and returning to 'normal life'. How much harder I find it to cope on my return. That the few days away has just emphasized how much I am missing in my day to day life. That if he died tomorrow I would sell up and relocate.
He suggested that I look at going up there more often. Several times a year as I used to when we lived in Gloucestershire. When I was 10 years younger than now. It wont solve the problem that I'll soon be another 10 years older and will find the journey even harder than now.
I fail to see how it matters to him where he lives. That apart from going out to take a small amount of exercise he never wants to go out. He doesn't want visitors. He doesn't want to socialise. He's reclusive and non communicative. I attempted a rational explanation of how lonely and alone I often felt. I even wonder whether once living near our old home town again he wouldn't want to get out and about.To look at his old haunts. To watch a game at his favourite football club.
And also there is my fear that he may get worse. And then I wouldn't be able to leave him for a week. Never mind several times a year.
I am still keen to return to Surrey/Sussex area to be closer to family. MyMan cannot imagine being back in the over crowded south east. Where there are stabbings, droughts and traffic jams on an hourly basis. He knows. He reads the newspapers. He watches the TV and sees Sky News 24. He tells me that I wont feel safe there. It doesn't matter that I tell him I have felt no fear when I go on a visit.
He asked why I am so keen on living there. When I said I would like to see family once a week for a few hours at a time rather than once a year for a week he told me it was an emotional reaction. Yes it is. I then became even more emotional and spent 6 days crying at the drop of a hat.
When I wasn't crying we tried to talk about my emotional feelings in a rational way. I explained just how wearying it is having to schedule in arrangements so that I can visit family. How much of a strain it feels choosing the 'right time' to leave him for a week. How tired I am to begin with. How tiring the journey can be. How tiring it is to get around to visit with each member of the family so that none feel slighted or left out. How so many deaths of the older members still haunt me as I'd not had chance to see them when they were ill. How I'd missed out on attending their funerals.
How after a few days of being away, with time to laugh giggle and relax with my sister and friends that after a few days I have then to start thinking of the journey home and returning to 'normal life'. How much harder I find it to cope on my return. That the few days away has just emphasized how much I am missing in my day to day life. That if he died tomorrow I would sell up and relocate.
He suggested that I look at going up there more often. Several times a year as I used to when we lived in Gloucestershire. When I was 10 years younger than now. It wont solve the problem that I'll soon be another 10 years older and will find the journey even harder than now.
I fail to see how it matters to him where he lives. That apart from going out to take a small amount of exercise he never wants to go out. He doesn't want visitors. He doesn't want to socialise. He's reclusive and non communicative. I attempted a rational explanation of how lonely and alone I often felt. I even wonder whether once living near our old home town again he wouldn't want to get out and about.To look at his old haunts. To watch a game at his favourite football club.
And also there is my fear that he may get worse. And then I wouldn't be able to leave him for a week. Never mind several times a year.
Wednesday, 21 May 2008
Thorny Issues
I've generally become used to a lower standard of living over the last 7 years. Financially, socially and domestically. Financially we had to curtail our spending once we realised that aMyMan's 'temporary period' of sick leave was stretching ahead with no end in sight. When self employed 'Sick Leave' isn't taken lightly. It can lead to an impression of unreliability. A self employed consultant is only as good as his reputation for delivering as per contract. MyMan took short term sick leave hoping that his health problems would improve with a period of rest. Once we realised it wouldn't we had to revise our plans and start living off hard earned capital. The Savings hoarded for our retirement. A small level of income from Incapacity Benefit along with the Mobility component of Disability Living Allowance [DLA] helped to pay for the essential extras such as his regular massage and chiropractic treatments.
Money was enough to pay for domestic essentials, the necessities of life. Clothes were serviceable rather than fashionable. Unable to take a holiday or meals out due to his disability meant we didn't miss not having the money to enjoy such luxuries. All manner of other economies were practiced for 7 years. Unable to work myself due to caring for MyMan any spare cash I had paid for voluntary NI contributions towards my state pension.
I knew from my previous professional experience in Social Services that MyMan should ask for a re-assessment of his DLA benefit. But he was reluctant. As he is not in a wheelchair he doesn't consider himself disabled. Disabled people in wheelchairs are able to do far more than he does and have a better quality of life. But there was no persuading him even when I told him it would help my finances if I was recognised by DWP as his carer. In the end with my savings whittling away I applied to my employer for a pension forecast and asked if it would be possible to be considered for early retirment on compassionate grounds. I was lucky, this was agreed about a year ago. I am so grateful as the regular small income removed some financial pressure.
Then last year MyMan's Community Psychiatric Nurse [CPN] asked him why didn't he receive the higher rate of DLA on Personal Care along with the Mobility component. At last MyMan agreed to apply for a re-assessment. The CPN and I completed the form on his behalf. A mammoth task in itself. Several weeks later the DWP advised us that on consideration an increase of benefit was turned down.
MyMan doesn't have the energy for day to day living. Anything else is far too much effort. He would have accepted the decision. But I felt that to have done so was to give in too easily. I wrote to ask for the reasons for their decision. I thought we should appeal against the decision. It was another chore I didn't need. Another stressor to contend with. MyMan said he had no intention of going to appeal - it would be something he just couldn't cope with. He was too tired and couldn't go through 'yet another medical examination'. He is fed up with hospitals and tests etc. I thought we should go through the appeal process , if he had to undergo another medical we could request that it be conducted at home to save him travelling. In the event we didn't need to; a letter arrived a few weeks later. After gathering evidence from his doctors, his chiropractor and CPN, he has been granted the maximum level of DLA.
A morning out of my week to take bridge lessons reduced the amount of time available for chores, something else had to give way. This year it has been the gardening. I am relying on the weekly 2 hours paid gardening help to just keep the garden ticking over. Plans for changes or new plantings have been postponed for another year.
When friends visit I know they probably wonder what I do with my time. I am still protective of MyMan's feelings so I don't explain. He needs so much in the way of prompting ' take pills, eat, shower, shave' etc. I don't think they realise that all he does each week is to clear the recycling and rubbish out ready for collection. Over the year he takes care of financial decisions on savings, investments and filling out tax returns. He struggles to manage these jobs but if he stops then what else will he have to boost his self esteem. I have to help by form filling or writing letters on his behalf. As his energy or pain levels are so variable I have to be ready to help at the drop of a hat when he wants to write a letter. When he does feel energetic he wants to get on with a task straight away as he never knows when he'll have another brief burst of energy.
Getting out of the house for exercise is confined to his 15 minute walk to buy a daily paper 4 days out of 7. The short walk home up the steep hill drains him. I save one day a week when I try take him out in the car. We can manage 2 hours out on a good day. So I look for a 15 minute journey - an hour there, a coffee break and a 15 minute trip home again. He usually needs to take a good rest on the bed to recover from such an outing. It doesn't always work to plan. I sometimes have to juggle plans. When he's not well enough to go we postpone to another day. If he doesn't get out in the car at least once a week then I worry that he'll become a homely version of institutionalised and agoraphobic.
Today we went to Homebase at Honiton to buy some plastic patio plant pots. We have 3 roses which need planting into patio pots. MyMan loves roses and said he wanted more. 'I'll take care of them' he said. Just as he said over the last 2 roses which he loves but hasn't weeded or pruned in the 5 years we've had them. But he is so rarely enthusiastic that I couldn't bear to demand a promise that he would take care of them. I'm hoping that he'll pot them on while I vacuum through tomorrow or when I'm at Bridge lesson next week.
What I haven't yet decided is - if he is too tired or feels too ill to deal with them do I get on and plant them on [I hate handling rose bushes - ouch!] or do I let them die and wither through neglect. I'm not sure which of these outomes will distress him the most.
Money was enough to pay for domestic essentials, the necessities of life. Clothes were serviceable rather than fashionable. Unable to take a holiday or meals out due to his disability meant we didn't miss not having the money to enjoy such luxuries. All manner of other economies were practiced for 7 years. Unable to work myself due to caring for MyMan any spare cash I had paid for voluntary NI contributions towards my state pension.
I knew from my previous professional experience in Social Services that MyMan should ask for a re-assessment of his DLA benefit. But he was reluctant. As he is not in a wheelchair he doesn't consider himself disabled. Disabled people in wheelchairs are able to do far more than he does and have a better quality of life. But there was no persuading him even when I told him it would help my finances if I was recognised by DWP as his carer. In the end with my savings whittling away I applied to my employer for a pension forecast and asked if it would be possible to be considered for early retirment on compassionate grounds. I was lucky, this was agreed about a year ago. I am so grateful as the regular small income removed some financial pressure.
Then last year MyMan's Community Psychiatric Nurse [CPN] asked him why didn't he receive the higher rate of DLA on Personal Care along with the Mobility component. At last MyMan agreed to apply for a re-assessment. The CPN and I completed the form on his behalf. A mammoth task in itself. Several weeks later the DWP advised us that on consideration an increase of benefit was turned down.
MyMan doesn't have the energy for day to day living. Anything else is far too much effort. He would have accepted the decision. But I felt that to have done so was to give in too easily. I wrote to ask for the reasons for their decision. I thought we should appeal against the decision. It was another chore I didn't need. Another stressor to contend with. MyMan said he had no intention of going to appeal - it would be something he just couldn't cope with. He was too tired and couldn't go through 'yet another medical examination'. He is fed up with hospitals and tests etc. I thought we should go through the appeal process , if he had to undergo another medical we could request that it be conducted at home to save him travelling. In the event we didn't need to; a letter arrived a few weeks later. After gathering evidence from his doctors, his chiropractor and CPN, he has been granted the maximum level of DLA.
I then applied for Carer's Allowance which went through very quickly. This extra amount of cash has relieved yet more of the worry about our finances. But by this time next year I won't be receiving it as I'll be entitled to claim my State pension. I'm not sure whether one is still paid a Carer's Allowance if decide to opt for a deferred payment of the State Pension. I'll have to seek advice.
I understand how MyMan feels about being labelled 'disabled' [although I prefer to think of it as 'less able'] I also have a problem thinking of myself as a 'Carer'. But that is what I am now - more than just a wife. The caring aspect is very demanding and emotionally draining, taking up much of my time. I no longer have time or energy to spend on the things I used to do. Domestically Standards have slipped. Little jobs that need doing around the house get left. It depresses me as my values are now lower. Caring is energy sapping beyond belief. When I have some time to myself I have to weigh up which is my highest need at that time. Sometimes it is to generally to clear de clutter out of the way, often to potter in the garden, many times to go out and seek some social interaction, light releif, and lately to study what I am learning at my weekly Bridge lessons.A morning out of my week to take bridge lessons reduced the amount of time available for chores, something else had to give way. This year it has been the gardening. I am relying on the weekly 2 hours paid gardening help to just keep the garden ticking over. Plans for changes or new plantings have been postponed for another year.
When friends visit I know they probably wonder what I do with my time. I am still protective of MyMan's feelings so I don't explain. He needs so much in the way of prompting ' take pills, eat, shower, shave' etc. I don't think they realise that all he does each week is to clear the recycling and rubbish out ready for collection. Over the year he takes care of financial decisions on savings, investments and filling out tax returns. He struggles to manage these jobs but if he stops then what else will he have to boost his self esteem. I have to help by form filling or writing letters on his behalf. As his energy or pain levels are so variable I have to be ready to help at the drop of a hat when he wants to write a letter. When he does feel energetic he wants to get on with a task straight away as he never knows when he'll have another brief burst of energy.
Getting out of the house for exercise is confined to his 15 minute walk to buy a daily paper 4 days out of 7. The short walk home up the steep hill drains him. I save one day a week when I try take him out in the car. We can manage 2 hours out on a good day. So I look for a 15 minute journey - an hour there, a coffee break and a 15 minute trip home again. He usually needs to take a good rest on the bed to recover from such an outing. It doesn't always work to plan. I sometimes have to juggle plans. When he's not well enough to go we postpone to another day. If he doesn't get out in the car at least once a week then I worry that he'll become a homely version of institutionalised and agoraphobic.
Today we went to Homebase at Honiton to buy some plastic patio plant pots. We have 3 roses which need planting into patio pots. MyMan loves roses and said he wanted more. 'I'll take care of them' he said. Just as he said over the last 2 roses which he loves but hasn't weeded or pruned in the 5 years we've had them. But he is so rarely enthusiastic that I couldn't bear to demand a promise that he would take care of them. I'm hoping that he'll pot them on while I vacuum through tomorrow or when I'm at Bridge lesson next week.
What I haven't yet decided is - if he is too tired or feels too ill to deal with them do I get on and plant them on [I hate handling rose bushes - ouch!] or do I let them die and wither through neglect. I'm not sure which of these outomes will distress him the most.
Monday, 11 June 2007
My Life As A Carer
- is the theme for today. Today is the first day of Carers Week. Various areas have events organised and if you are interested in seeing what has been arranged for you area then click on this link to visit the site for more information.
Even if you love the person you care for, the emotional and physical demands of caring can be extremely stressful. The person you care for may be elderly, someone with dementia, a chronic/terminal illness or a serious disability. If you live with the person you care for it may be you feel you have no time to properly relax and chill out. At different times you may feel full of anger, frustration, resentment and guilt. We all react differently to the stresses of caring. If you join a local carers support group it may well help you to find out that your feelings are quite normal and are experienced by many carers. Do explore the links on the sidebar on the right and find out what help is available. We all need a safe way to 'let off steam' at some time.
Even if you love the person you care for, the emotional and physical demands of caring can be extremely stressful. The person you care for may be elderly, someone with dementia, a chronic/terminal illness or a serious disability. If you live with the person you care for it may be you feel you have no time to properly relax and chill out. At different times you may feel full of anger, frustration, resentment and guilt. We all react differently to the stresses of caring. If you join a local carers support group it may well help you to find out that your feelings are quite normal and are experienced by many carers. Do explore the links on the sidebar on the right and find out what help is available. We all need a safe way to 'let off steam' at some time.
Saturday, 7 April 2007
Being a Selfish Pig
Acting as carer and support for a spouse with a physical and mental illness isn't easy. Love is still part of the relationship but it is not the same. There is a subtle shift - it's a different kind of love. Sometimes though exasperation can set in and that's when you need to be a 'Selfish Pig' and demand time to yourself and some degree of privacy. In trying to adjust to the changes in our circumstances I found a book called 'The Selfish Pig's Guide to Caring'. I found it humorous. It gave me pause for thought. As my man's health took a gradual down turn and depression took hold - I always assumed that everything would improve one day. Then after several years (I would have to stop, think and count backwards to try and work out when was the last time we could count on life as being 'normal') - you start to wonder "maybe this is 'as good as it gets'?"At that stage it can get very depressing for both of you. That's why I stopped the world. Got off for a while. Read the book. Then tried to think of ways of preserving my own identity. My own sanity. And to have some quality time away from caring duties. It was at this stage that I realised that if I couldn't always go out to socialise when I needed a pick me up, I could Blog. So here I am.
Thursday, 15 March 2007
Coping Strategies
Like a widow I am going to have to learn to be more resourceful. But unlike a widow I don't have the luxury of a home to return to - to curl up alone in a safe place and 'lick my wounds'. When I'm out and about I have to put on a 'brave face' otherwise people will avoid me. Friends understand and are quietly supportive if I'm not on top form. When I'm home I have to put on a brave face again.Otherwise my depressive gets even more anxious and upset at the distress he is causing me and how it is upsetting my life. It's a roller coaster ride. Sometimes the negativity is soul destroying. The petty nit picking is demoralising. I've lost my best friend and I'm sad.
I examine the website on how to cope with self esteem problems when living with a depressed person and know that although I often feel that life is a sickening roller coaster ride and feel as if I am trying to balance on a very wobbly fence - it is not surprising that I feel burnt out and stressed.
To quote Anne Sheffield "Interactions with depression sufferers range from difficult to unbearable. When you offer love and affection, they are not returned. When you offer sympathy, you are told you don't understand what is wrong. When you offer support, you receive complaints that it is not enough, or not the right kind. Those who remind us of the depressive's need for sympathy, support, and love are correct, but they leave out the other half of the equation: it is hard to give all those things when you're not receiving them."
I examine the website on how to cope with self esteem problems when living with a depressed person and know that although I often feel that life is a sickening roller coaster ride and feel as if I am trying to balance on a very wobbly fence - it is not surprising that I feel burnt out and stressed.
To quote Anne Sheffield "Interactions with depression sufferers range from difficult to unbearable. When you offer love and affection, they are not returned. When you offer sympathy, you are told you don't understand what is wrong. When you offer support, you receive complaints that it is not enough, or not the right kind. Those who remind us of the depressive's need for sympathy, support, and love are correct, but they leave out the other half of the equation: it is hard to give all those things when you're not receiving them."
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